Monday, February 25, 2013

Four hours in a car seat and she was ready to play. No harm came to this Denny’s - we did clean it up. Just a cute girl pretending to call everyone on the phone at the hotel (who gave us a special Scottish Rite discounted rate – thank you Marriott!)

Bright and early in the morning, we headed over. Loved the free and ample parking! Everyone was so nice, from the receptionists to the nurses to the radiology techs! Our NPN was great with Bella. She did a thorough exam, listened to me, and talked to Bella – and Bella didn’t cry once! Yeah! The doctor walked in and could immediately tell me all about the three types of problems kids with Down syndrome have with their patellas. She, of course, has the most complicated one. He wants to do surgery to attach that patella. She should be able to walk(!!!!!!!) after she recovers. She’ll be in a cast for six weeks and then she’ll have her rehab time. But from an anatomy standpoint, she should be able to walk! So excited! We meet with one of the anesthesiologists. We signed all the releases so they could get her cardiac, pulmonology, endocrine, and GI clearances for surgery. We just have to meet with one more doctor and then we can schedule the surgery.

I was impressed with how unrushed everyone was. They took their time with us. The doctor knew the specialist that we had been referred to up in Seattle. They worked together in Boston. He felt that Scottish Rite could treat her and we wouldn’t have to make any trips out of state –yeah! They said the minimum stay would be four days (my hospital PTSD kicked in at this point). But four days in exchange for Bella’s ability to walk is a very small price to pay!! We are so excited for what this could be for Bella’s future!

A 30 second video Jason caught of us. I thought he was taking a picture! :)

Update - Have to add in case anyone is coming to our blog seeking an opinion about Scottish Rite hospital that I will no longer be recommending their services.

Sunday, February 10, 2013

She wants so badly to stand and run and play “Duck, Duck, Goose.” She’s really good about making her wants/needs known

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Time for new AFOs and braces. Measuring and casting Bella. So grateful our orthotist comes to the house!

She can outlast all of us on Dynamite!

To you it’s a remote, to Bella, it’s a phone. I put her in the car to run an errand and she told me she was “Happy!”

I decided to make the girls some counting jars from old Similac cans. Since one of her favorite activities is “putting in,” it works really well. So for the 7 can, there are 7 little cars. She is doing so well learning!

Sunday, February 3, 2013

Bella – she loves this shirt. It says, “I love Grandpa.” When I told her that, she started patting her shirt and saying “gan pa” and then “gan ma.” She loves her Grandparents!

On days we don’t have a day nurse, she joins us during school, she works hard! :)

Playing with Brother.

Working hard in PT – Joy showing her how it’s done! OK, but only for a few steps!

Tuesday morning, I woke to find this. (Notice the balloon is still fully inflated – ouch!))

Her stoma was too closed for me to put it back in. So my Tuesday plans were changed. Bella has taught me to be f-l-e-x-i-b-l-e! We spent some time visiting the pediatrician, calling GI and pedi surg clinics and finally ended up in the ER where pedi surg had to re-insert her g-button.

Sammi and Bella playing on the Wii. Sammi told me she is working on her relationship with Bella. She knows the nursing hours are decreasing and feels she needs to get to know Bella better so she can help more. Seriously? How did I get this angel? Love ya Sam!

Playing in the blocks

Friday night, Jason, Bella, and I went to dinner. We tried Fried Ice Cream. Bella would taste it and then spit it out. :)

A little oxygen at night – so grateful for my concentrator and that we can do this OUT OF THE HOSPITAL! I’m feeling so bad for Cammie! Wondering about the neb mask? Well, she WILL NOT tolerate the nasal cannula, so we work with what we have.

Well, maybe I’m too close to see you clearlyOr is it now my role to simply believe?You’re just one of those mysteriesThat may never be solved in timeBut you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do itAnd Trevor will do what Trevor will do when Trevor is ready to do itAnd Lucy will do what Lucy will do when Lucy is ready to do itAnd they’ll do it in their own time